Children

09/08/2016

Kai has never really been able to participate in after-school activities like soccer or baseball for two reasons: the first is that he is terrible at activities like soccer and baseball, and the second is that our nonstop therapy schedule made it impossible. His neurologist was always after me to put him in sports with other kids, to which I would waspishly reply that the neurologist was welcome to haul Kai’s carcass to soccer or whatever, but that I was just too tired after speech, OT, social skills and vision therapies to drive him anywhere, much less help some sixteen-year-old Park District employee teach an autistic kid how to play a team sport.

But then we found ourselves suddenly free of these time constraints. Dropping OT and social skills group meant that we could put Kai in some classes and sports. Ryan, too, would be free to take classes and hang out with friends. So we put her in the unfortunately-titled-but-hopefully-fun Happy Hands Art Class. I put Kai in a Lego building class. And they both wanted to take Tae Kwon Do, or, as Kai calls it, Ninja training.

There is a martial arts studio not even a block from my house. This studio has been recommended to me over and over. It seemed like a no-brainer, especially after I told the manager a little about Kai.

“We get tons of autistic kids,” he said to me.

Dynamite.

So yesterday after school, I told the kids they would try out Ninja Training.

I asked Ryan to go upstairs and change for Tae Kwon Do. She chose a purple dress, which is not at all what I meant, but arguing about clothes with Ryan is hard so I left it alone. At the studio, they tossed her into the mix of kids with barely a word of explanation, purple dress and all, but she punched and kicked along with everyone else, kids who called the teacher “sir” and stood in perfect formation. They had a lesson in Stranger Danger and even practiced resisting being kidnapped, which was both alarming and probably a good idea.

She skipped up to me after class and declared it to be “super fun,” and we were one down and one to go as I told Kai to take off his shoes and socks like the other kids and head out on to the mat.

I told the instructor that Kai has autism.

“I have autism in my family,” he said, “and we have lots of autistic kids here.”

The teacher didn’t bat an eye. “Well, if you like the class we’ll get you some ninja clothes.”

“Okay,” Kai said, and I realized that I had been holding my breath.

The thing is, that people always say that they’re cool with autistic kids, but this is not often the case. It’s more like they’re cool with the idea of the existence of autistic kids, just not in their class. Autistic kids tend to zig when they’re supposed to zag and frankly most people cannot handle this. But as I watched Kai in class, the instructor seemed to get him.

Kai was watching himself in the mirror rather than watching the instructor, so the teacher asked all the kids to look at him.

“Look at me, not the mirror,” he said.

Several kids were watching themselves and a few turned to look at the teacher.

“Look at me, not the mirror,” he said again.

Now everyone but Kai had turned to look at the teacher.

“Look at me, not the mirror,” he said yet again.

And, with what looked like a great effort, Kai finally turned his head.

I was in heaven. Maybe this is exactly what Kai needs! He needs to focus. Perhaps he could use Tae Kwon Do/Ninja Training to learn to pay attention in class.

Kai was having a hard time standing still, so the teacher asked everyone to stand perfectly still. If you moved, you had to do 10 push-ups.

Several of the other kids had to do the push-ups, but not Kai. He stood perfectly still.

I was ready to start writing checks at this point. I even began to indulge in a fantasy, that this would be Kai’s narrative—overcoming autism through martial arts. He would get a black belt and have one of those viral videos where music plays and words flash on the screen: “…and then he discovered Tae Kwon Do.” (Cut to a shot of Kai meditating, then getting up from the floor without using his hands and assuming a fighting stance) “…and suddenly he felt comfortable in his own skin.”

And then, 11 minutes into class, Kai broke from formation and walked up to the teacher, a guy who puts kids in formation and requires that they call him “sir.”

“Any ice water?” Kai asked.

“No,” the teacher said.

“Whew,” Kai said, wandering aimlessly through the other kids, who were standing at attention. “I’m getting thirsty.”

Kai went back to his spot and sat down.

“Oh my god,” I said, more loudly than I’d meant to. Several of the parents turned to look at me. I willed him to get back up.

I thought the teacher might get mad, but he didn’t. Instead he asked Kai to stand up, which Kai did after the instructor gave him until the count of five, but with much griping and a heavy sigh.

Next, the kids were asked to do two front kicks with the teaching assistant, and then run to the teacher, who was holding a mat, and perform something called a flying kick.

There was a girl there, probably Kai’s age, named Janelle, who executed these moves perfectly. There were a couple of boys who tried very hard, but ended up falling over after the flying kick. There was an older girl who had so much force with her flying kick that the teacher was surprised. When it was Kai’s turn, Kai ran into him with his shoulder, linebacker-style.

“Do it again,” the teacher said. “No hands, no shoulders, just a kick.”

Kai tried again. It wasn’t perfect, but at least it was a kick and not a tackle.

“Good,” the teacher said.

Then the teacher produced a dollar.

“Okay,” he said, “the first person to kick me so hard that I take a step backwards gets this dollar.”

“Ooo,” Kai said.

The kids all tried to knock the teacher back with their flying kicks. Janelle had a great kick, but wasn’t big enough to move him. Those two boys kept falling over. Kai flew at him with a combination push-kick that got him another reprimand for not using just his feet. The older girl won the dollar.

And that was when Kai lost his shit altogether.

He let out a howl of grief and pain.

“I wanted the dollar!” he wailed.

His face was red and he was swiping tears out of his eyes.

The kids were still kicking, Kai included, though he was crying.

“I wanted the dollar!” Kai said again, and he ran toward the instructor, leaving a scream of rage in his wake.

“You can be mad,” the teacher said. “Let it out on the mat.”

Kai did exactly that, continuing to kick the assistant and then fly at the teacher, performing a sort of tackle kick that the instructor didn’t bother to correct. “Good!” was all he said.

Other parents began to bury themselves in their books and phones, eyes anywhere but on Kai. I grabbed him at one point and asked him to stop crying, but he was too far gone.

“I want a dollar,” he wailed, over and over and over and I wanted the earth to open up and swallow me, for time to speed up, for the wine-equivalent of the Kool-Aid man bust down the wall and provide the dual comforts of alcohol and a good, old-fashioned distraction.

Janelle ran up to me and handed me something.

“Give this to your son,” she said, and skipped back to her place in line before I could react.

I looked down.

She had given me a dollar.

:::

After class, I found the instructor.

“So,” I said. “What do you think?”

He looked at me for a long moment. “I liked that he kept at it,” he said finally.

I’d liked that, too.

I mean, if there hadn’t ever been the possibility of that damn dollar, this might have gone great for Kai.

“I know Ryan wants to come back. If Kai wants to…” I trailed off.

“I’ll have to talk to the team,” the instructor said. “We’ll let you know about Kai.”

This would have ordinarily made me furious, but I found that, aside from being too worn out by Kai’s freak-out to summon any rage, I understood perfectly. Kai was a giant, 75-pound distraction in a class about respect and focus.

“Kai would have to conform to the class,” the instructor said.

“I understand,” I said.

I sat down heavily next to Kai on a bench and sighed.

You’d think I would no longer be surprised by anything that Kai does, but there you go. Kai surprises me all the time.

Janelle walked by and I gave her back her dollar.

“Honey,” I said gently, “I can’t take this from you. I can’t tell you how sweet this was of you, but I can't take your money.”

She took her dollar back, looking slightly hurt. I felt terrible, but I can’t take money from little girls, even if they mean well and the dollar probably would have solved everyone’s problems.

While Kai put his shoes and socks on, I thought about his first time at OT, how he sat in the corner and cried, how the big space had overwhelmed him and we had to do OT in a tiny, closet-sized room using picture schedules until he felt more comfortable, and I wished there was a way to do that here, how he could do this if he had the right support, how he is a hot mess when you tossed him cold out in the real world, which I always forget and always breaks my heart.

I felt a profound sense of hopelessness and exhaustion.

“Take a big breath and calm down,” Kai said to himself, and he did exactly that which was nothing short of amazing.

I looked at him.

“Did you like Ninja Training?” I asked him. “Would you want to come back?”

08/01/2016

Kai’s been going to the same Park District day camp for four years. It’s close, it’s cheap, and we’ve always had a great experience. The first year, I dropped him off on the first day with a, “He has autism, ‘kthanksbye!” and ran out the door to do whatever it was I was late for.

And if he wasn’t a perfect camper—see his tendency to wander—his counselors tended to fall in love with him, thereby ensuring that he was well taken care of. The campers swim, they go on field trips to other parks, they ride bikes, and Kai always seemed to enjoy it. We never really needed an aide at camp (an inclusion aide, they call it), because it’s about 10,000 times easier to get Kai to go to the playground than it is to get him to write a topic sentence and four supporting ones.

This year, Kai has been less enthusiastic about camp. I chalked this up to him missing his camp counselor from last year, Vanessa. Kai had a little crush on Vanessa, which I know not because he told me, but because he always said her name in a breathy sigh: Vanessaaaah. Apparently, his new counselor, Luis, didn’t have the same je ne sais quoi (and I think we all sais quoi).

:::

A few weeks ago, I noticed that Kai had a scratch on his forehead.

“Where’d you get that scratch?” I asked.

He told me he didn’t have time for my questions. This was fine, because I also didn’t have time for my questions, as I was running out the door. Scott, however, got the full story out of him, though Scott said that Kai didn’t wat to tell him at all.

Some kids at camp had tried to take his hat, and scratched his forehead in the process.

“Kai,” I asked later, “were you guys playing and that’s why they took your hat?”

“No,” he said.

“Were they mean-teasing you?” I asked.

“Yes.”

I was silent for a long moment. Kai was lost on the iPad.

“Do you want to keep going to camp?” I asked.

“I will take a day off,” he said.

“You’re not playing on your iPad all day,” I said to him.

He sighed. “Fine, then I’ll go to camp.”

:::

Autistic kids are great targets for bullies. Sometimes they can’t distinguish between genuine friends and manipulative jerks. Sometimes they don’t have language to tell on their tormentors. Sometimes they act weird and do weird things, making them easy fodder for someone looking for power.

Kai’s had a lot of support around spotting a bully. He’s had IEP goals about it, in addition to units on bullying in his social skills group. At school he has an aide, Dalila, who can be eyes and ears, plus they watch him like a hawk there. But camp is different, especially this year.

I wondered about these hat-stealers. Kai couldn’t tell me who they were or even whether they were boys or girls. I worried. But he kept saying that he liked camp and wanted to go back. I took him at his word. He would tell me if he didn’t want to go back, I reasoned.

The next time I dropped Kai off, I spoke to Luis about the incident and asked him to keep an eye out.

Later day when I picked Kai up, I looked around at the group of 9-year-olds and wondered which of them had tried to steal Kai’s hat. I picked out one kid, a beefy kid who was challenging the other boys to an arm wrestling match. He got one taker, and immediately won the match, but…

“You cheated,” I said to him.

He looked at me, surprised.

“You’re supposed to keep your elbow on the table. That’s regulation.”

“Oh,” he said to the kid who lost. “Sorry.”

Of course, I had no idea whether this kid was a hat-stealer or not. He seemed like a nice kid, actually. Kai was sitting right next to him reading a book and everyone seemed to coexist peacefully. He said goodbye to us when we left.

Our friend Monica picked the kids up from camp last Tuesday, and warned me that Kai was in a state because he’d lost his hat.

“Lost his hat” was how it was presented to Monica. If you know Kai, you know that he’s never without his hat—even in family portraits—so I definitely understood his distress.

“How did you lose your hat?” I asked when I’d caught up with him. “When did you have it last?”

“At the pool,” he said, miserably.

I figured as much. He’d once lost all his clothes at the pool when he put them in a locker and then didn’t remember which one. I figured the same thing happened that day.

“Is it in the lost and found? Did you check?”

“Just forget about it,” Kai said.

“And your sunglasses?” I asked. He had won a pair of sunglasses with a crazy lightning bolt attached to them at a crane game in an arcade.

Kai made a sound like, “Hunnnorrrrl.” I could hear the catch in his voice. He was near tears.

“Kai,” I said, “I can help you but you have to tell me what happened.”

“I don’t have time,” he said.

“Kai,” I said, beginning to wonder if this was something more than just losing his hat. “What happened?”

“A kid took them out of my locker.”

“And then what?”

“I don’t want to talk about it,” he said.

I started driving. “I’m trying to help you get your hat and sunglasses back,” I said. “Please tell me.”

Kai started to cry, whether from reluctance to tell me or reluctance to relive the situation or frustration—or all three—I don’t know. “I was using a locker, and someone took my hat and sunglasses out of my locker, and wouldn’t let me use it, and I tried to get back in and he was blocking me, and…I bit him.”

“Oh, my God. You bit a kid?” I asked.

“Yeah.”

I processed this for a moment.

“Then what?”

“A man picked me up.”

“Who?”

“I don’t know.”

Alarm bells were clanging by now. “One of the counselors?”

“I tried to kick him, but only got one good kick,” Kai said.

“Jesus,” I said, deciding to let that go for the moment. “Then what happened?”

“I got a timeout for all of swimming.”

“Jesus,” I said again.

:::

Now, for those of you following this at home, I’m going to sum up Kai’s story for you.

Kai was changing for the pool, and had chosen a locker. Locker number 45, to be exact. And

Some other kid decided that he wanted Kai’s locker, and removed Kai’s hat and sunglasses from it. This upset Kai very much, and he tried to force his stuff back into the locker.

The other kid was preventing him from doing this, and

Kai bit him.

Eventually a counselor picked Kai up and carried him from the locker room, but not before Kai got a kick in at the counselor.

Kai had to sit in time out during swimming, and, in the melee,

Kai’s hat and sunglasses went missing.

Oh, and lest we forget, this was all presented to us as “Kai lost his hat.”

I parked the car in front of the swimming pool.

“Stay here,” I said to Kai, and went up to the guard. Not the lifeguard, the guy whose job it is to make sure you’re not packing heat at the pool. Yes, that’s a thing.

“My son lost his hat and sunglasses today. He’s a camper. Have you seen them?”

The guy looked around his office.

“No,” he said. “I have some towels, and this old t-shirt.”

I looked around the office, too.

Feeling defeated and full of confused emotions, I turned to go.

“There’s a hat in the garbage in the men’s locker room,” the guard offered.

I turned to look at him.

“Could you go get it?” I asked in a clipped tone. Obviously this was Kai’s hat. I had no idea why the guard hadn’t started with that little tidbit of information.

He returned shortly, brandishing Kai’s green Minecraft hat, holding it away from him as though it was thoroughly offensive.

“What about the sunglasses? They’re blue with a lightning bolt on them.”

He looked like I’d suggested he clean toilets with his toothbrush.

“But,” he protested, “it’s the garbage.”

I narrowed my eyes at him. “I’ll go in there if you won’t do it,” I said.

He sighed. “Fine,” he said, and went back into the locker room. He returned seconds later.

“Not there,” he said, his eyes everywhere but on mine.

And though I knew he hadn’t looked, I decided that the hat was victory enough, and left. I had bigger fish to fry.

I handed Kai his hat when I got in the car.

“What the fuck?” Kai asked.

And because he’d used it appropriately, and because these were my exact sentiments, I let that go, too.

07/26/2016

Kai’s longtime occupational therapist, Emily, made a suggestion last spring that it might be time to think about winding down. She said she was running out of goals for him.

Emily has been seeing Kai since he was two. She came to our house when Kai qualified for Early Intervention. Ryan was weeks old. Kai is now old enough to say sarcastic things like, “Duh,” in response to a question. Ryan is tall enough to ride roller coasters. We’ve been doing this a long time.

I got kind of panicky when Emily suggested we might take a break. For one thing, he still needs…something. He needs heavy input. He likes to crash into the big pillows and roll himself through the squeeze machine. He gets a little bonkers if we skip a couple of weeks. And yet, we are running out of goals. We’ve been through coordination goals, catching and throwing, fine motor, shoe-tying, determining left from right on yourself and somebody else. Emily said she was reaching this summer—they’re working on keyboarding.

Emily lives in my neighborhood, so she knows what a slog it is to get out to the therapy center. It’s a four-hour endeavor, and most of that is spent in the car. I whale through audiobooks—last summer I bought them according to length (I spent 95 hours on an exhaustive biography of Elvis Presley). There are a lot of days that I struggle to stay awake on the drive and have roll down the windows and sing or call Scott and make him talk to me until he has to run to a meeting.

“Think of all the free time you’d have,” Emily said.

And it’s true. Four hours is a long time.

Especially since we go to the center not once a week, but twice—on Thursdays, we go for group therapy. The group that Kai attends on Thursdays has a parent component to it, where we are supposed to talk about our kids’ struggles with ADHD. Last Thursday, however, I hijacked group time to talk about no longer doing OT.

“Who am I if I’m not doing this every week,” I asked. “And he still needs…He still needs help.”

The director of the group suggested that it might be time to find Kai ways that he can get heavy sensory input by himself through sports, which we would have time for if we weren’t always hauling ourselves to therapy.

All of that was true. Kai does need to begin to take ownership of his needs, and we would have time for things like Ninja training, which is what Kai calls martial arts. Or swimming lessons. Or whatever. The director said that her son found that he could get a lot of his sensory needs met by skateboarding and had me almost convinced that turning Kai loose in the world on a piece of wood with wheels was a good idea.

I still felt a little lost, though. Is it really time to be done? Kai’s not…I mean, he can’t…But…

My attachment to the center and this course of therapy—is it habit? Muscle memory? What if everything falls apart when we take these things away?

“We’ll still be here,” the director said, “if you need us.”

I nodded. I guessed that we could try some form of tapering down. Besides, we would still be coming to the center for speech.

After group was over, Kai’s speech therapist said she wanted to talk to me.

She thought Kai was ready to take a break from speech, too.

:::

A few days later, I was on the phone with some folks from Rush Hospital’s autism treatment center. They were looking for some kids Kai’s age to participate in a social skills study which would, in essence, be free therapy. Plus it’s only a few blocks from my house.

A research assistant was asking me questions about Kai, like when was he diagnosed and is he on any medications.

“And what is his highest form of communication?” he asked. “Would you say he’s nonverbal, nonverbal but uses assistive technology, has some words and phrases, or speaks in full sentences?”

There but for the grace of God, I thought. “He speaks in full sentences,” I replied.

“Can you give me an example of a full sentence?”

I drew a total blank at this. Kai talks. He asks for what he wants and will give you a full description of any dinosaur. You can ask him if he knows what the opposite of nocturnal is because you have no idea, and he will tell you that it’s diurnal, and then you’ll ask him how he knows that, but he can never find his shoes, and he’ll laugh and say, “Good one, Mommy.”

I didn’t know what to say, so I said, “When he has to go to the bathroom, he’ll say that he needs to see a man about a horse.”

The research assistant was quiet on the other end. “Is that your answer?” he said, finally.

I said that I supposed it was.

:::

After I hung up (Kai qualified for the study—the effect of oxytocin on social skills) I was thinking about Barb, Kai’s speech therapist at the center, saying to me that Kai has so much language that he was ready to be done for a while.

“How do you feel about that?” she’d asked me.

The truth of it is that I always fear that people will take Kai’s services away, that he’ll rock school so much that they’ll take away his support. But then, that’s what we want, isn’t it? And Barb isn't school, for whom Kai is a budget line item. Barb knows Kai, she likes him. Her eyes got a little watery talking about saying goodbye.

“It’s a good thing,” Barb had said.

And it is. It really is.

But, he still needs help. He hasn’t made a single friend at camp. One of the kids stole his hat, and in the process scratched his forehead, leaving a one-inch gouge in his skin, and Kai couldn’t tell who had done it.

He still needs…

He still has autism.

:::

Friday was “bring your bike” day at summer camp. I, of course, completely forgot and had to go back home and get the kids’ bikes. This was no small feat considering it was 250 degrees out, their bikes are heavy and awkward. They both still had training wheels.

I sort of hated to bring Kai’s little-kid bike to his big-kid camp. I wondered if he would get made fun of for his training wheels. Later that day I called this special needs recreation place in Aurora that gets special needs kids riding, and left a message. I thought about bargaining with Emily, that I would consider taking Kai out of OT after she got him riding a bike, and not a moment before.

When I picked the kids up that afternoon, I asked if they’d had fun. They said they had.

“My bike is so heavy,” Kai said. “It’s hard to go uphill.”

“You know what would make it feel much lighter?” I asked.

“What?”

“If we took off the training wheels.”

Kai seemed to consider this.

“Tomorrow,” I said. “We’re going to do it tomorrow.”

So we did.

And this happened:

Suddenly, Kai could ride a bike, and as I watched him pedal away from me, I found to my surprise that rather than having any sense of sunrise-sunset nostalgia for a little boy who just discovered freedom, I was deeply, profoundly relieved. I could begin to imagine that we could, maybe, begin to let go of our old routine, our old notions of what we need.

In group last week, I took a moment to wallow in self-pity.

“The thing about autism is that there’s nobody steering this ship but me. How will I know what our next steps are?”

The director, who has her own, grown, special needs son, was kind enough not to judge me for my brief lapse into whiny petulance. “That’s the case with any disability,” she said. She said we’d figure it out. That Kai would figure it out.

So I don’t know what we’ll do in the fall. I think Kai still needs social skills groups, and I’m trying to find one. He needs massive help managing his ADHD. There’s that oxytocin study. I told Scott to get Kai a skateboard. And as Saturday became Sunday and we found ourselves back at the park, Kai whizzing past us on his bike, the brim of his hat peaking from under his helmet, I realized that I was beginning to feel a glimmer of freedom, too.

06/01/2016

There is nothing more torturous to me than a school report. Maybe I’ll feel differently when I have a kid with a report due who gives even a mouse-sized shit about said report, but that is not my current status. No, my current status is that Kai I had a report on Morocco due the Tuesday after Memorial Day, a date the teachers must have picked because they hate us and want us to suffer horribly.

Kai doesn’t care about Morocco. And he doesn’t care about this report. Other reports he didn’t care about include Leopard Seals, Alpacas, Buzz Aldrin and Poland. Please believe me when I tell you that if I didn’t care about these reports, the number of people caring about these reports would drop to zero.

That he got any of them done is because I did them.

That’s right.

I did them. I read the assignment, created a timeline and a strategy to get them done, I planned some educational outings to the zoo or the yarn store or the Moroccan restaurant or to the apartment of a guy who gives Moroccan percussion lessons. I used the internet to find out what dinosaurs were discovered in Poland or Morocco in an attempt to hold Kai’s attention for more than five minutes. I bought the posterboard, printed the pictures, typed up the information, art directed the videos or the presentation.

Kai’s job was to stand there.

And complain.

:::

This last report of the year has been plagued with problems from the beginning. I got the assignment a week late because Kai lost his copy. Kai’s aide has been out on medical leave, so communication has been sporadic. In an effort to find some way to connect Kai with Morocco, I’d tried to hook Kai up with a guy from the Old Town School of Folk Music who teaches African rhythms, but whose communication lags several days behind every e-mail and voicemail. I’d taken Kai out for some Moroccan food, but, since the traditional dish of Morocco is not chicken nuggets and fries, the experience was pretty much a bust, as you can see from this picture:

So, as the days slipped by and the deadline loomed, I became filled with emotions that range from dread to anger to resignation, back to anger and then, mercifully, to wine-soaked denial. But then the weekend happened, and, as the saying goes, shit got real.

:::

Friday:

Kai told me that he was working on his report with his special ed teacher. With the due date approaching, I asked him to make sure to bring everything home so we could just finish it all up over the weekend.

Ha.

Hahahahaha!

HAHAHAHAHA*sob*

At 4 pm on Friday afternoon, with a report due on Tuesday, the sum total of what Kai I had to work with was ONE WORD written in pencil on a scrap of paper clipped to the BLANK assignment sheet: Morocco.

:::

After cleaning the bits of blood, bone and gray matter that covered the inside of my car from when my head exploded, I sat there and stewed in what could only be described as a deep well of rage and hopelessness.

For one thing, no one, and I mean no one, should have to do a report due at the end of May, but beyond that, what was Kai I going to do?

I considered, fairly seriously, the idea of blowing it off. Just…not doing it. What would the consequences be? He got a D in social studies? He would still pass 3rd grade. This idea spent a lot of time on the table until I realized that Kai would actually be upset about one thing—that while everyone in class was presenting his report, he wouldn’t have one to present. The entire goal of keeping him in a general education class is that he does everything his peers do.

Plus, Kai does, actually, like to present things to his class, even if he is only minimally invested in the work.

And so, reluctantly, we put on our thinking fez and went to work.

:::

Saturday:

After I ran a 10-mile race and took the kids to a birthday party, I used the last of my remaining energy to summon Kai to me so we could get started on our report.

The first thing I did was to find out what dinosaurs were discovered in Morocco. I’m pretty sure that when you think of Morocco, you think of the Spinosaurus, a 97-million-year-old aquatic dinosaur discovered in a cave near Erfoud.

No?

I printed out some pictures of this behemouth and set Kai to cutting them out.

“This is going to give my report extra pizzazz,” he said brightly.

I also printed out a map and a flag and some Moroccan tiles to decorate the posterboard, which Kai glued on all crooked and with enough glue to trap and fossilize a mosquito.

It was around this time that I ran out of steam and opened a beer, and everyone lost interest in Morocco, but not before the Moroccan drumming guy called me back (finally) and offered to give Kai a lesson on Monday morning at 10 am.

I briefly thought about how many things I’d rather do on Memorial Day than go to some guy’s apartment so he can teach my son about Moroccan 6/8 time for $50, but if ever a grade needed to be bought it was this one, so I agreed and then went to sit on the couch for a while.

:::

Sunday:

I told Kai that we needed to finish four categories today and get them glued onto the posterboard.

“Kai,” I said, “It would appear that Morocco is bordered by the Atlantic Ocean, the Mediterranean Sea and Algeria.”

“Can I go watch TV?” he said, by way of reply.

Literally, he said that.

I stared at him for a long moment, before simply saying, “No.”

I asked him to type the descriptions of the land and water forms of Morocco.

“M,” I said.

He typed an M.

“O” I said.

He typed an O.

“R,” I said.

He typed an E, then backspaced to delete it. Then a Y.

Scott walked into the kitchen and I pretended to shove something sharp in my eye.

“Why don’t you type it,” Kai said to me.

“Because I already passed third grade,” I reminded him, before agreeing to type it up while he read me the information, which later morphed into me reading to him what I had typed and Kai editorializing that he didn’t like Moroccan food and that the Spinosaurus reminds him of the Deinosuchus, a marine reptile that has nothing to do with this project, but made it into the report anyway.

We began gluing the map and the flag, the dinosaur pictures. Ryan wanted to help, so I left them and wandered into the kitchen for stare at my computer. After a few moments, Kai wandered in and sat next to me.

“Are you done?” I asked.

“Ryan is gluing it,” he said.

And I decided that was fine and we could be done for the day.

:::

Monday:

I knew we were in trouble when Kai came downstairs in full-autism mode, all thousand-yard stare and inarticulate garblings.

“We’re going for our drumming lesson today,” I said.

“Nurrrghwuhll,” he replied.

“What?” I asked.

“Ohnghh.”

On the way over to the guy’s studio I reminded Kai that he had to be polite.

“Huhooh.”

The music teacher held out his hand for Kai to shake, but Kai walked right past him and up the stairs.

I started to reprimand Kai, but the music teacher waved me off. He was a nice guy, and, judging by the breadth and depth of the lesson, clearly a long-time student of middle-eastern and African culture.

He showed us some instruments and played some examples of different kinds of music.

“That one’s from the Berbers. In North Africa, they’re like our Native Americans like the Cherokee or the Sioux. You’ve heard of those, right?”

Kai stared into space.

“I have,” I answered, wishing for some sort of trap door to appear beneath my feet.

:::

Kai finally warmed up when he got to play a drum that I can no longer remember the name of and a tambourine called a Riq. He took some video of the teacher playing his Oud.

“What do you think so far, Kai?” the teacher said.

“I’d like to try to lift those,” he said, pointing to some 10-pound dumbbells sitting on the windowsill.

The music teacher patiently finished the wide-ranging and expansive lesson, explaining, among other things, onomatopoeia, the commonalities between Moroccan folk music and Spanish Flamenco, and at one point tapping out the rhythm to Get Lucky by Daft Punk on one of his drums.

Kai leaned into me. “This is so boring,” he said.

And I resisted the urge to murder him, but only just barely.

:::

When we got home, I looked at Kai’s assignment sheet. We still had to cover history, plants and animals, landmarks and put the music stuff together.

Kai grabbed one of his graphic novels and sat down on the couch.

“Kai,” I said, “we have to finish this.”

“Aahwrollgh,” he replied.

Suddenly, I was incredibly tired. The idea of barking at Kai until we got this thing done seemed stupid. It was 80 degrees outside. The sky was blue.

So, with Plants and Animals, History, and a video presentation of a music lesson left to do, we went to the pool.

03/23/2016

On Monday morning, I reminded Kai that he was not to call his classmate, Michael, fat.

He’d had a pretty good run, announcing that he hadn’t used the “F” word each day of the previous week, but then on Friday, he’d slipped up.

“What is going to happen to you if I find out that you’ve called Michael fat?” I asked.

“You are going to take away the iPad for two weeks,” he replied.

“That’s right.”

It wasn’t four hours later that I got a text from Dalila.

:::

When I picked him up at school, I asked him what had happened to him that day.

“I tripped over a rock,” he said.

“Oh?” I asked.

“Like 30 times,” he said.

“You tripped over a rock, and then tripped over the same rock 29 more times?” I asked.

“Yes,” he said.

I let that mystery slide into the ether, and changed my line of questioning.

“Did you get into any trouble?”

“Only because Sylas is a knob.”

“A knob?” I asked.

“A Mincecraft knob*,” he said. “You know, he likes to kill the bushes.”

Well I don’t know, and I don’t care about Sylas’ Minecraft skills or lack thereof.

“Did you call Michael fat today?”

His shoulders slumped, but he wasn’t going to give it up without a fight.

“No,” he said.

“I already know that you did. Twice.”

He actually leaned against me then and put his head on my shoulder, the picture of misery. We both knew what was coming, and neither one of us were happy about it. I put my arm around him and gave him a squeeze.

“Do you remember what I said this morning? That if you did it again there would be no iPad for two weeks?”

Kai uttered a low and anguished moan full of hoplessness and aching dread.

:::

I got some details later from Dalila.

Kai had had a conflict with Sylas, who likes to tease Kai about whether there is such a thing as a pterodactyl, which there isn’t and which drives Kai nuts and which no doubt precipitated the Minecraft insult. This lead to some work in the peer mediation circle. Somehow the kids brought the subject around to Kai calling other kids names.

“Well,” Kai said, “Amelia is bossy and Michal is F-A-T,” he said, as though spelling it made it okay. Michael was right there.

Later, Michael gave a ukulele recital to the class during show-and-tell, strumming and singing a song. Apparently the song had a word in it like “cat” or “bat.”

“Rhymes with ‘fat,’” Kai said.

And now he has no iPad, computer or TV for two long weeks.

:::

Later that evening, at Scott’s urging, I wrote an e-mail to Michael’s mother, apologizing and telling her that we were working on this with Kai.

She didn’t write me back.

:::

This morning on the way to school, we saw a graffiti blaster truck working on a tagged building.

“What are they doing?” Ryan asked.

“They were taking off that paint,” I replied.

“That’s too bad,” Ryan said. “I think it’s pretty.”

"You do?" I asked.

It was a portrait of Satan.

“Who made it?” Ryan asked.

I sighed. “In Chicago, there are things called gangs, and those guys spray paint walls to mark their territory. They are bad people.”

“Bad like Kai?” Ryan asked.

I sighed.

“Oh, you guys. Kai’s not bad,” I said.

“I just get in trouble a lot,” Kai said.

“You sure do, honey,” I said.

You sure do.

*I think he meant "noob." Though "knob" does sound like a legitimate insult, doesn't it?

03/22/2016

I got a call on Friday while I was at work. It was Kai’s vision therapist, telling me that she’d consulted with our eye doctor and Kai was done with his therapy.

I knew that we were going to be winding down. At Kai’s last appointment, I myself had watched as Kai went through his eyeball gymnastics—tracking an object using only his eyes, converging on an object, tracking letters across a page, reading a grade-appropriate passage in a book. He even did the written portion of the test in invisible ink (because Kai), which was a first for the doctor and doubly hard because Kai couldn’t even see what he was doing until we shined a blacklight on his work.

The therapist told me that we didn’t even need to come in for our regularly scheduled appointment that afternoon.

:::

Of all the therapies we do, this vision thing is the most soul-sucking. It’s a four-hour boondoggle, and only 45 minutes of that time is spent in therapy. The rest is spent in the car, stopping and going in Friday afternoon rush-hour traffic from downtown Chicago, out past O’Hare, turning right at the Schaumburg Ikea and then another 10 miles until you’re pretty much at the Wisconsin border. Our therapist was nice and seemed to really get Kai if the dinosaur-themed eye exercises were any indication, but there is nothing for Ryan to do except play with a couple of ancient, broken down puzzles or read some truly god-awful books, such as this one, for sale on Amazon for a penny.

Ryan had begun to deeply resent being dragged along to vision therapy, and complained bitterly the last few times. I had even begun to toss around the idea of hiring a sitter for her, not just because of her general burn-out but because I didn’t want to read Presents from Grandma (also a penny) one more time ever.

Still, the thought of being done with vision therapy made me feel sort of unmoored, not unlike when I took Kai home from the hospital after his NICU stay when he was born. One minute he was covered in wires and tubes, his vital statistics on constant display for us to watch and worry over, and the next minute he was…free. What would we worry about now? How would we know what his O2 levels were?

I was full of doubt. Is Kai really cured? Will he regress? How would I know? And, even more pressing, what would I do with my afternoon?

:::

My car was packed with the necessities for a four-hour car trip—iPads and popcorn, a craft for Ryan to keep her occupied so I could read InTouch instead of Presents from Grandma, and two cans of sparkling water. But, now that I was no longer a vision therapy Sherpa, I no longer had to race to school to pick the kids up early, pop popcorn in the cafeteria, hustle the kids into the car and point it north for Arlington Heights.

Instead I worked for an extra half-hour. I bought a pair of sunglasses. I ate my lunch.

On a whim, I stopped at the grocery store and bought Kai a balloon that said, “Congratulations,” and a bouquet of tulips for Ryan.

I hugged kai when I saw him and gave him the balloon. “We don’t have to go there anymore!” I told him. “I’m so proud of you.”

He grinned. I told him to think of something super-fun to do instead.

And that’s when Kai’s aide, Dalila, told me that we needed to talk about what had happened at school that day.

During library, the librarian read a book and the text contained the word, “fat.” Kai thought his best course of action would be to clarify for the rest of the students that fat was “like Michael.” Then he refused to work with the other kids on a group project, and THEN, when Dalila informed him that he was indeed going to be working on the project, suggested that Dalila should be fired.

I rounded on Kai.

“Do you even know what ‘fired’ means?” I asked, and proceeded to ream him out, loudly and with great gusto right there on the playground, for calling Michael fat again, for not doing his work, for his callous disrespect for the person who makes it possible for him to function with his dignity in tact much less pass the third grade. Other kids and parents quickly found other places to be, and even Dalila seemed to feel genuinely sorry that she’d had to tell me any of this.

He mumbled an apology to Dalila. I told him he’d lost his iPad privileges for the day. Again.

I looked at him for a few long moments. His eyes were down cast, his shoulders slumped. He was still holding a balloon that said, “Congratulations.”

:::

A good mother might have taken the kids home then, so they could spend a long afternoon staring at the ceiling in quiet reflection. I have never claimed to be thus, however, and instead took the kids for ice cream. Kai was being punished with the iPad, after all, and we suddenly had four free hours. I drew the line at going to the arcade, however.

On Saturday, Scott took Kai to the park, where he hit a ball with a bat two out of three times.

I couldn’t believe it.

Kai tracked a converging object with enough accuracy to hit it—a feat he wouldn’t have been capable of even a few months ago.

So maybe we really are done with vision therapy.

Just in time.

Now we have Friday afternoons free to figure out how to stop insulting Michael.

03/10/2016

This would not be the first time Kai had done this. He can’t remember his classmates' names, and one time he was told to line up behind a certain girl. The other kids pointed her out.

“Oh, the one with the belly that sticks out?” he asked.

That girl was sufficiently upset that her mother came to see Kai’s teacher with suggestions of bullying, and Kai’s teacher had to explain autism to her in halting Spanish.

In that circumstance, Kai wasn’t being intentionally mean, just pointing out a characteristic, though I would imagine that to be cold comfort to a girl sensitive about her weight.

This time, however, Kai wasn’t making a mistake.

He didn’t just tell the kid he was fat, he told the kid that he was, and I quote, “tired of his fatness.”

:::

“Kai,” I said, once we were in the car. “Did you say something mean to Michael?”

Kai gave a withering sigh. “I am just tired of his fatness.”

“KAI!” I said. “You may NOT call other people fat! It’s not nice and it hurts their feelings.”

“But I’m tired of his fatness!” Kai repeated.

“What does Michael’s body type have to do with you?” I asked.

“I’m tired of it.”

This was going nowhere, so I switched tack.

“What if someone said they hated boys who wear dinosaur hats?” I asked.

Kai sighed again.

“Fine,” he said. “New rule. I won’t ever say ‘fat.’”

“That’s an excellent rule,” I said.

Later, while Kai was in OT, I talked with his social worker, Sue, about it.

“Well, was it a black and white thing for Kai?” she asked. “Was he just making an observation?”

I told her that Michael’s “fatness” seemed to offend him in some way.

We talked for a while and she wrote some notes next to his name in her appointment book. We were still talking when Kai came back from his session with his OT, Emily, in tow.

“Kai told me he missed recess because he called some kid fat,” she said.

Emily said they talked about it, and while they were doing so, Andrea, Kai’s social skills group leader walked into the room. Andrea reminded Kai that there are some things we think but don’t say. Before we left, Sue asked him what he was going to do the next time he was tempted to call someone fat.

“I’m going to keep it in my mind,” Kai said.

:::

I wrote Kai’s teacher an e-mail later that night to share some of the language that we were using with Kai so that we could all be on the same page: The “thought bubble” is where you put things you think but can’t say; “bucket fillers” are people who build others up, aka fill one’s bucket; “bucket dippers” are people who tear you down, aka take stuff out of your bucket.

I was feeling pretty good about how we’d handled this, as a team with the teachers and therapists coming together to deliver a consistent message, how Kai seemed to get it.

The next day, Kai’s teacher returned my e-mail, thanking me for sharing, and informing me that Kai had refused to sit next to Michael in group time because, as he said loudly, Michael was too fat.

:::

When I picked him up from school, I tore into him.

Hadn’t we talked about this? Didn’t we decide that Kai wasn’t going to call Michael fat anymore? I told him that I was disappointed, and that there was no way in hell that I was going to turn a bully loose into the world. I told him that he lost his iPad privileges for the day, and that he had to write a journal entry about why it’s not okay to call people fat. I told him that people come in all shapes, sizes and colors and that he should never, ever make fun of someone for being different. And I reminded him that he isn’t exactly free from some pretty hefty differences himself.

“Okay,” Kai said.

“Okay, what?” I asked, still slightly seething.

He didn’t reply.

“Kai,” I said, “what did I just say to you?”

He waited a few beats before answering.

“I wasn’t listening,” he said.

And my head exploded.

:::

Later, after I’d calmed down, I asked him what was up. I think my exact words were, “Kai, what is up with you?”

“I don’t know,” he said.

“Well, are you a nice kid or a mean kid? I guess you should probably decide.”

He thought for a minute. “Maybe I’m a little bit of both?”

:::

This morning, I reminded him that he was not, under any circumstances, to use the word “fat” around Michael.

“Just remember to keep it in your mind, and don’t say it.”

I told him that if he said it again, he would lose the iPad for a week.

“I’ll remember,” he said, and set about finding his shoes and his coat.

In the car, he was quiet, staring out the window. I reminded the kids of the schedule for the day and that I would see them after school.

01/04/2016

The kids have been playing this game on the iPad called Dumb Ways to Die.

It’s kind of a cute game, if a game about dying in dumb ways is cute. It’s about not setting your hair on fire or selling your kidneys on the internet. Which, you know, yeah. There are these blobby looking characters and you have to put their hair fires out or stop them eating a bottle of glue. My favorite part, though, is the part where all you have to do is NOT touch the red button.

That’s it.

Just don’t touch the red button for like five seconds.

Just.

Don’t touch the button.

You should see Kai do this, the not touching.

It’s like telling a compass not to point north.

I have this R2D2 car phone charger that has—wait for it—a red button on it.

“What’s this red button for?” Ryan asked me once.

“Ha! Don’t press it,” I said.

“Why not?” Ryan asked.

“Because you shouldn’t go around pressing red buttons,” I replied.

And then Kai spoke. “I really want to press it,” he said.

“Don’t do it,” I said.

There was a pause from the back seat, the internal struggle palpable from two feet away.

“It doesn’t do anything,” Kai said.

“Lucky for you,” I replied.

:::

One of Kai’s many struggles is with impulse control. This is part of his tendency to wander, to make dumb decisions about when to leave the house, to be randomly destructive.

Take, for example, the fact that Kai pulled the toilet paper holder out of the wall last week. Most of us could probably just, you know, use the toilet paper and not feel the need to, you know. Pull the toilet paper holder itself out of the wall.

When I asked him why he did it, he said, “Because I wanted to see it spin.”

I have no idea what this means, beyond me having to call a guy to fix my wall and reinstall my toilet paper holder, which will cost fifty bucks.

Scott was much less sanguine that I about it, as it’s his fifty bucks I’m going to hand over.

:::

A few days later, we found ourselves at some friends’ to celebrate the New Year. Kai was watching videos in the basement with the other kids. Until he wasn’t. He’d wandered around the house, looking for trouble until he finally found it.

“I don’t know what the protocol is here,” the host’s brother said, having found me lurking in the kitchen near the wine, “but it seems like Kai pulled a painting off the wall.”

I found Kai in the master bedroom, and sure enough, he’d pulled a painting off the wall. Said painting had fallen and was wedged behind the headboard of the bed. There was a giant hole in the plaster.

“What happened?” I asked.

“I just—”

“Never mind,” I said, interrupting him and trying to un-wedge the painting. I could barely lift it. I scooted the bed over and tried to wrestle the painting free, finally giving up when I thought I might do more damage.

Our hostess was really nice about it. She had painted the piece, and had no trouble hoisting it out from behind the bed, assuring me that it was undamaged and no big deal.

But it is a big deal. For one thing, if Kai did this to one of Scott’s pieces of art, I would have to put him in Witness Protection. For another thing, what the actual fuck? Who goes to someone else’s house and pulls a painting off the wall?

We waited until we got home, but we yelled at him in such a way that Kai’s first few moments of 2016 were soaked in tears, and the first weekend was devoid of all screens.

:::

The next morning, I found Kai lying in his darkened room. I thought he was asleep until I saw him blink. He was staring into space.

I felt awful for having yelled at him the night before, and I crawled into bed with him. He leaned against me.

“You okay?” I asked.

He didn’t answer.

I rubbed his back.

“Kai,” I said, “I sure wish I knew what it was like to be you.”

He didn’t answer this, either.

“Sometimes, I think that for you the whole world is a red button.”

He sighed then. “Yes,” he said miserably.

:::

The following Saturday, we checked into a hotel so the kids could do some swimming, per their request. This was something we got into the habit of doing last year when Scott was trying to rack up hotel points, and since we can pretty much stay for free anytime because of the aforementioned points, we packed our swimsuits and hit the road.

The only problem was that there had been quite the New Year’s Eve bash at the hotel, and they’d trashed the pool. Some of the lights were out, and you couldn’t see the bottom because the water was murky, more like a pond. The manager said it was just dust clouding the water, and we really want to believe that.

Other, better parents might have made the kids leave, but we stayed, mostly because the kids jumped in the water before we could stop them and at that point you just hope that there’s enough chlorine to kill whatever the revelers left behind.

Ryan swam up out of the murk to show me a tissue she’d found, and I nearly threw up.

Anyway, Kai took off his goggles at one point and Ryan tossed them into the deep end knowing he wouldn’t dive under there without them. After much ballyhoo, I made her give Kai his goggles back, but no sooner had she done so then Kai himself tossed them into the middle of the pool. They sank to the bottom and completely disappeared from view.

Ryan dived to try to find them, but we never did, which goes to show you we shouldn’t have let the kids swim in that pool.

“Kai,” I said at one point, “why did you even toss your goggles into the deepest part of the pool after you already lost them once?”

Kai, his head barely out of the water, was sweeping the bottom of the pool with his toes for his goggles.

He stopped and looked at me a little sheepishly. “It was a red button,” he said.

I laughed then, because the kind of communication we’d just had was worth the cost of a new pair of goggles. And probably the antibiotics I’ll have to buy the kids in a couple of days.

12/09/2015

I told you on Monday that I got a note from Kai’s teacher. The note was in the form of Kai’s home-school journal, a notebook that is supposed to go back and forth between home and school (sorry if that was super-obvious) and let me know what’s going on with Kai.

I haven’t seen the journal in a while, but his teachers have been writing in it, so I took the time to leaf through the entries, and one thing stood out.

Kai seems to spend a lot of time in the bathroom.

Last Friday, he spent so much time in there that his teacher sent her assistant in to check on him. When Kai still hadn’t returned after 30 minutes, she sent a student in there after him. The student went to the wrong bathroom, reported that Kai wasn’t in there, which resulted in a Code Yellow while everyone searched for Kai, whom they presumed to have wandered somewhere. He does that, you know.

Anyway, when he finally turned back up, he looked at the clock and brightened.

“Oh,” he said. “I only have to do this work for another five minutes and then it’s time to go home!” At which point all the adults looked at him and then looked at each other, understanding that they had been played.

It is clear that Kai goes to the bathroom for 30 minutes on a regular basis to get out of doing work.

And he’s got us all between a rock and a hard place.

:::

I don’t know how long it takes an average person to, you know, poop, so I searched the Internet, as you do.

“For me about 3.5 hours, which is why I love Farm Heroes on my cell phone.” Posted by Jeff.

I’m pretty sure that Jeff works at the DMV.

:::

Please believe me when I tell you that you wrongly accuse your child of bluffing when they say they have to poop only once.

I won’t tell you which kid, but I will tell you that I was much later to work and MUCH more traumatized than I would have been if I had just found a nearby establishment with a bathroom in which the kid could poop. This is something I now take very seriously, and it is for this reason that I can rate the cleanliness of every gas station restroom off the Eisenhower Expressway (pro-tip, the one at 17th Street is to be avoided at all costs. At. All. Costs.).

It is also for this reason that Kai’s teacher and his aide are at a loss. I mean, on the one hand, we’re all pretty sure he’s in the bathroom to avoid doing his work. He never has to take a 30-minute poop during recess or lunch or art or math or any of the things he likes and he’s good at. He takes a 30-minute poop during writing. Which he hates the way Indiana Jones hates snakes.

But then, on the other hand, they can’t really tell him that he can’t go to the bathroom. Like I said. You only call a bluff like that the wrong way once.

“It takes Hubby around 20 minutes to poop...once in the morning before work and once when he gets home from work (doesn't matter what time of day). 20 minutes a poop seemed really excessive to me so I asked if he was spending a bunch of that time reading or enjoying alone time, but he insists that he needs the entire time to get the deed done and that he is healthy.”

And no, before you ask, I did not AskMetafilter.

I’m pretty sure that this woman’s need to manage her husband’s bowel movements is why he hides from her after work for 20 minutes, but this leads us into the mysterious land called “guy territory.” This could be a guy thing. Guys do loiter in there (see Jeff from the DMV above). I mean, that’s where they keep their magazines, amirite? On the weekends we’ll lose Kai in the house somewhere and finally find him on the toilet playing Plants Vs. Zombies.

“Kai,” Scott will say, “that’s long enough to be in here.”

“But I’m not done!” Kai will protest.

“Well, wrap it up, pal. It’s been 30 minutes.”

:::

Kai was late leaving school on Tuesday afternoon.

“He was in the bathroom for a long time,” his aide, Dalila, told me.

“Longer than 30 minutes?” I asked.

“Oh, yeah. He left in the middle of writing his sentences and was in there until all the rest of the kids had their coats on.”

“So he didn’t want to do his work,” I said.

She shrugged. “I don’t know. Probably not. But it was after lunch, so maybe…I mean if you gotta go…”

:::

I took the kids to get frozen yogurt after school, a rare day when a therapy was cancelled and we could do what we pleased with the afternoon.

Kai was eating his fro-yo and staring into space.

“Kai,” I said, “do you ever go to the bathroom so you don’t have to write your sentences?”

“Yes,” he said. His expression didn’t change, nor did he look at me.

“Just so I understand correctly,” I countered, “you tell your teacher that you have to poop with the intent of not doing your sentences with your spelling words?”

“Yes,” he said, with the same thousand-yard stare that has become his hallmark this month.

I nodded. I had no idea how to solve this little conundrum. I thought about something I’d discussed with my friend Quincy earlier in the day. She said that she has the best luck with her kids when she asks them how they would solve a problem, giving them some agency. It was worth a try.

“Kai, what would make the whole situation better?”

He looked at me then.

“If I didn’t have to go to school for a few days.”

And I understood. I understood that writing is hard for him, that it’s not like math that comes so easily and with such self-assurance. I understood that there is so much to this writing thing—it’s visual tracking, it’s fine motor, it’s language, it’s planning, it’s all the things that are hard for him wrapped up in to one horrible daily task that he can avoid with a carefully timed poop.

As I sat there in the frozen yogurt store, thinking about how I could help his teacher solve this problem, how we could work with a behaviorist on a plan to work on the task avoidance, his OT to work on his writing, how we were going to figure out a way to get him to come out of the bathroom in a reasonable time frame that gave him agency over his colon but didn’t sabotage his learning time in 3rd grade, I was suddenly exhausted.

I have no idea how to do any of those things.

I really don’t.

But you know what I can do? I can lock myself in the bathroom for 45 minutes, reading an InTouch and drinking a Diet Coke.

12/07/2015

Kai has had more trouble than usual falling asleep since the beginning of December. This, I suspect, is a combo platter of the medicine we give him becoming less effective (this happens eventually with all of his sleep meds), and anticipation of Christmas.

As a result, he’s driving everyone nuts—not answering when you call his name, refusing to do any work. His teacher, who has been his teacher for two-and-a-half years, even sent home a note home about him, which was pretty much my first note home in two-and-a-half years. I swear that woman has the patience of a saint.

I was up late last night fiddling with the Elf (as in the one on the Shelf), when Kai slunk downstairs and sat down in front of my computer. It was midnight.

“What are you doing up?” I asked, horrified for all the reasons one might be horrified to find their child awake in the middle of the night—a hard wake-up in the morning, my child-free time invaded with demands for snacks, fiddling with the damn Elf that was supposed to be Santa’s emissary and not something one’s mother moves every night so she can extort decent behavior out of you.

“Why is the Elf up there?” he asked, indicating the Elf's new position on top of cabinet. By rights, he should have been in the same position he'd been in when I sent Kai to bed hours earlier.

I cast about for a clever lie and couldn't fine one. “Oh, I hadn’t noticed. He must have already gone to the North Pole and back.”

“Can I have a snack?”

“You need to go to bed, Kai.”

“But I’m not tired and my iPad died.”

I sighed again. “You can use mine, Buddy,” I said, and I marched him up to my room. With Scott in California for the week I had Kai get in bed with me, ostensibly so I could keep an eye on him. He lay under the covers, watching Paw Patrol. I read a few pages of my book, my eyes getting so heavy that I reread the same paragraph three times before I gave up and turned off the light.

:::

It was pitch dark when I woke up, the house silent. I looked at the clock. It was 5:41.

Then I rolled over to check on Kai.

And he was gone.

Scott’s side of the bed was empty, the covers kicked down to the edge.

I rolled back over and closed my eyes, thinking about where Kai might be. I assumed he’d gone back to his room, and started to drift off again, and then a tiny sliver of doubt crossed my mind.

I mean, chances were slim that he’d done this, but who knew with Kai? Maybe he went out back to—I don’t know—play with his flashlight or dig for dinosaur fossils? The door would have locked behind him. What if he was outside shivering? Or worse?

I swung my feet down and padded to his room. The door was closed.

“Kai?” I said, as I opened it.

I stood on my tiptoes to see the top bunk.

He wasn’t there.

Damn.

Sometimes, he goes downstairs in the middle of a sleepless night, and I jogged halfway down the staircase so I could see the couch in the TV room.

Nope.

Sometimes, he goes into the kitchen in the middle of the night, eats a few ice cream sandwiches and watches youtube.

I didn’t even need to look. It was too dark, too quiet, I could feel the emptiness.

“Kai?” I called, panic bubbling.

“Kai?” I called, louder, not expecting an answer but hoping just the same.

I ran back to my room and threw on the light, searching for my Uggs, unplugging my phone.

Where was he?

The covers where jumbled at the food of the bed, and, with the desperation of the, uh, desperate, I pulled them off the bed completely.

And there he was, sleeping peacefully, curled into a tiny ball.

I stared at him for a long moment, this strange kid who has never in his 8 years and 10 months on this planet ever given me a moment’s peace, before covering him back up and crawling back into bed myself.